The seven-day Porphyria Awareness Week campaign kicks off May 12 to spread the word about porphyria and culminates with Global Porphyria Day on May 18, a Sunday. The theme of this year’s observance is “Think Porphyria,” according to the American Porphyria Foundation, which is joining forces with…

For this year’s Porphyria Awareness Week (PAW), running April 15-22, the American Porphyria Foundation (APF) is putting a spotlight on those individuals with a rare genetic disease that falls under the disorder’s umbrella. The goal is to increase awareness of porphyria among the public, as well as advocate…

My 16-year-old son Brady agreed to pop on a #PorphyriaTogether T-shirt and pose with Mom for last Friday’s #PurpleForPorphyria global event in honor of Porphyria Awareness Week 2022. I am a happy mom anytime he cozies up to me. The resulting image took my breath away. Staring at me…

All types of porphyria share a hallmark symptom: horrific pain. For many of us, our illness is largely invisible. For some of us, it becomes a nearly insurmountable obstacle that dictates our lives. While I would never wish porphyria on another human, I frequently find myself wanting my loved…

Note: This story was updated April 1, 2022, to add events being held by Global Porphyria Advocacy Coalition, the umbrella organization for porphyria patient advocacy organizations. From hosting film watch parties to posting photos of pets, supporters are set to mark Porphyria Awareness Week (PAW), observed April 2–9 this…

Named from the ancient Greek word “porphura,” which means purple, the group of diseases called porphyria often is identified by that same color, according to Scientific American. Today, purple helps to unite members of the porphyria community. This week, you’ll find me gathering my purple gear in anticipation of…

Activities are afoot to mark Porphyria Awareness Week — taking place April 10–17 this year — set aside annually to call attention to this group of inherited disorders that affect an estimated 1 in 500 to 1 in 50,000 individuals globally. Supporters are encouraged to engage in Zoom sessions and…

Four years ago, I was diagnosed with acute hepatic porphyria (AHP), and it’s complicated. It’s a liver disease affecting my blood; it’s also an inherited metabolic disorder with neurovisceral effects. I’m still figuring out how to dumb down the mechanics. For this column, let’s skip the medical jargon. Porphyria…

Credit: APF April 21-28, 2018 is Porphyria Awareness Week, and the American Porphyria Foundation (APF) is encouraging everyone to join them in raising awareness and spreading information about porphyria. Porphyria is the term used to refer to a…